#chronic illness is just living

[perrettatheinjured]

A phrase that bothers me, as a chronically ill person, is "You must be feeling better."

First of all, this is patronizing. This is a phrase smug adults say to a child who they think is malingering. It is not what you say to your adult friend with an intractable forever-illness.

Second, there is no "better." I'm feeling somewhat bad all the time, and that's ok, but I don't think of this in terms of "better" and "worse." Are you, an able person, thinking of your daily existence as "better" and "worse"? How would you feel if you told someone about a particularly above-average day, and they responded by saying "Oh, so things must be going better"?

I'm not good at walking. I haven't been in remission in two years. If I have a day where I can make my own meals, that doesn't mean I am "better." It means I am having a good day, which is ephemeral, but this is ok. I don't think that tomorrow will be "worse," even I can't do as many things as today. I think tomorrow will be tomorrow.

[cayliecoltrane]

quick lil ETHOwO redraw

[erenalias]

“But House MD is unrealistic because of all the medical malpractice!!”

WRONG

House MD is unrealistic because he gives the proper diagnosis more often than not

[uncanny-tranny]

I think it would really benefit people to internalize that mental illnesses are often chronic and not acute. Some of us will never be able to jump the hurdle of managing illness, much less sustaining a sense of normalcy. Many of us will never "recover," will never manage symptoms, will never even come close to appearing normal - and this is for any condition, even the ones labeled as "simple" disorders or "easy-to-manage" disorders.

It isn't a failure if you cannot manage your symptoms. It isn't a moral failure, and you aren't an awful person. You are human. There's only so much you can do before recognizing that you cannot lift the world. Give yourself the space to be ill because, functionally, you are.

[4spooniesupport]

[transjudas]

When that stuff happens how do you keep up momentum in a band? (x, x)

[akindplace]

being “different” is a lifetime of people telling that they hate me without trying to understand me. being “different” is very isolating until i find community with other “different” people and realize my experiences are not that exceptionally strange, that other people can relate to me and i can relate to them. there is power in realizing that we’re not as alone as we think, because we can’t be excluded anymore by those who want us powerless. being “different” is realizing i’m not that different and i’m not alone and i’m not powerless. it’s being arm in arm with someone and telling the world you can hate us all you want, but we’re not going anywhere.

[bigfatbreak]

this is a psa: dont call your chronically ill coworker fuckin terminal all its gonna do is make me want to bite you

[froggiethelesbian]

There’s something so intimate with seeing another disabled person in public. I was walking down the street with a friend to a cafe, my red cane in hand. Coming down from the opposite street was a young women with her friend. I saw her bedazzled cane, covered in stickers and art then looked up to her eyes. She had been looking at my cane, covered head to toe in stickers, before looking up to me. We both smiled and kept walking.But with no words spoken there was a message.

“You’re just like me. We are both here, living our lives, walking with a friend like everyone else. We exist, not just online but here in person, we are not alone.”

[swordsonnet]

lately, i've seen more people in the online autistic community acknowledging the struggles of people with higher support needs, which is of course an important development. but for some, that seems to come with the implicit assumption that low needs autistics "have it easy" or experience no stigma at all, which is just wrong??? people with low support needs are still disabled by their autism and still face discrimination because of it. sure, they are impaired to a lesser degree than those with higher support needs, but that doesn't mean you can just erase their struggles, y'know?

[camellia-thea]

i know we talk a lot about the isolation of chronic illness and disability, but i really don't think ablebodied folk get it.

i have made one new friend in person since graduating highschool in 2020. she is my housemate's girlfriend. she stays over frequently, and the only reason we are friends is because she stays over and we have shared university papers. i would not have had the opportunity to befriend her otherwise. that is in the space of three years.

i don't go out much. i cannot guarantee that i will leave my house within any given week. technically i have class i need to go to twice a week for an hour, but those moments aren't time for friends, they're time for classwork and i don't interact with people in a social capacity there.

i simply do not get the opportunity to meet people.

i cannot go out with friends and meet new people that way, because my social circle is already so small, and i don't have the energy to go out half the time anyway. when i do, i suffer for it later.

i don't meet people on campus because i'm immuno-compromised, and ableds seem to have forgotten that we are still in a pandemic.

i don't go to clubs or go out for the sake of going out because i can't. i've grown agoraphobic, because i am so worried that something health related will happen and i'll get stuck somewhere alone. i hate leaving the house because of the guarantee of an anxiety attack which leaves my body more likely to flare. it's a vicious cycle of isolation.

i am not the only one who has experienced this -- i can still leave the house, i can still go and visit friends with assistance. i struggle, but at the end of the day, it's still an option. there are others who are completely isolated.

the worst of it is that people leave. people get tired of the 'i can't come, i'm sorry', of the 'hey, i'm sick, can we postpone?'. even people who you love and hold dearly will stop trying. and it's awful. you have to sit and watch these people who you love walk away because they can't deal with your disability. i don't have words to describe how much that hurts.

it really is impossible for ablebodied people to understand, because for the majority of us, this isn't temporary. this is just how we have to live. and your social circle can only really get smaller.

[absentlyabbie]

don't be afraid of buying things that make your life easier. don't talk yourself out of it, beat yourself up for being "lazy", or shame yourself for not being able to do things the "right" way so you don't deserve to try it a different way.

if there's a thing out there that can make something faster, more bearable, less painful, more tolerable, anything like that at all, and you can afford it? you have the right, you deserve it, and you should do it.

i've stuck for the last several years with exclusively those detachable sprayer showerheads, because i need to be able to sit down in the bath and it makes the entire operation easier, so i'm less likely to risk a concussion or pass out or wobble and slip.

for the last few years, i've been using one with a little powerwash spray setting and i use it before and after every shower and it keeps my tub and shower cleaner so much longer, which is great because i hate cleaning the bath and can put it off for months, and scrubbing kills my shoulders.

sometimes, whether it's the executive dysfunction, or the depression, or knowing that i become entirely detached from the concept of time when in the shower, if i can't bring myself to get in the damn thing and do a full-blown shower, and i know i'd just be uncomfortable and not clean and still keep putting it off (because i can easily lose well over an hour once in there), i will kneel on my (cushy, quick-dry, memory foam) bathroom mat beside the tub and lean over it to wash my hair and face and maybe soap up to my shoulders. then later when it feels like a way more manageable and shorter task i can do a quick scrub and rinse.

i've bought cbd for when my joint pain makes sleeping otherwise impossible (even though it's expensive) and a work desk that has expandable legs to be a bed desk if i ever need to work sick (i'm lucky to be remote since my job change).

i've bought the screw-top, 40oz, insulated mugs and extra long plastic straws (do not @ me) and the pop-bottom giant cube ice trays all because every one of those helps ensure i drink more water every day (and so does the faucet-mounted water filter).

i buy specific individual snacks that require little to no prep so even when the execution of making a sandwich is Too Damn Much, i can still make myself do some calorie intake.

i talked myself into a cushioned mattress topper to relieve my spine and because it's way cheaper than a new mattress. i bought blackout curtains for our old apartment because the outdoor lights were insanely bright at all hours and made sleep even more elusive.

i've purchased slip on-only shoes or no-tie laces because i hate tying shoelace knots, my hands are less dexterous than ever (and hurt), and because i struggle with time management and it's one small thing to shave off just a little more time so i'm a little less late.

i didn't buy all of these things all at once, definitely. i am, sadly, made of meat and not money.

but i started budgeting, slowly, more and more of whatever amount of disposable income i had after bills towards "thing to make life suck less and not be so hard" and i can't regret it in the least.

i deserve not only small comforts and joys, but also less pain and difficulty, and ways to make challenging parts of life a little more within my reach with not quite as much effort.

so do you.

[houseswife]

we spend the entire show watching house do anything to treat his pain — he goes to (understandably) insane, destructive lengths just to ensure he never has to suffer being sober. his entire life is focused around a cycle of distraction, thrill-seeking, and avoidance. we know that his home is filled with hundreds upon hundreds of pills, so he can always prolong and maximise those moments where his agony is muffled. and yet, in the final scene, we see him dive head-on into the end, and despite this being the most gruelling, insurmountable prognosis of his entire life, we see him smile bathed in the sunlight; those muted tones are dauntingly lifted, yet there’s no echo of a bottle rattling.

[icewindandboringhorror]

................ he 

[heyitsmemel]

hi hello gals and gays. Here is a rare wav from me struggling with the flu. The virus has mainly been in my chest but my entire body is so wrecked I was able to induce super easily. No talking bc I’m literally unable to 😭 Do not listen if you can't stand harsh coughing because it gets a bit rough. If it sounds a bit weird the first half of the recording is from yesterday and the second half is from today, bc the coughing is so much worse in the second half lmao. Ok that's it thankkk you for feeding me so good lately tumblr love u all <3

also personal rant about ableism and intentional contagion in the comments :///

[4spooniesupport]